Category: cauda equina syndrome

a jumble of things

by Midnight Demon, posted in blogging, cauda equina syndrome

I was sleepy today. I stayed in bed most of the day to try and give my leg some rest. I am getting hungry even though I just had a small pizza and cherry pie. I guess because I didn’t eat much yesterday, it is catching up with me today. I really want to order a burger with avocado but I am holding off for now on that.

I tried writing my intro and I think I have it ok enough. I might look at it tomorrow and make changes. I want to have this book done by January so I can be ready for the editor when she is ready for it. I also took down the names of the chapters that I have so far. I have to type them up tonight. I have been busy and I have not had a cup of coffee. I probably should. Maybe it will dampen my appetite.

I tried to find the blog I wrote about grief but I think I forgot to tag it as such. And of course, I don’t remember what I called it. I know it is recent though. I will go through my blogs and see if I can find it. Another mission that requires coffee!

I am feeling really down. Not suicidal down, but down to the point where I don’t want to do anything but just sleep. I was up late last night playing my stupid game. I just realized that by me having multiple accounts, I am just playing against myself. How is that for fun! But there are only a few players that play consistently to give you stuff so it is hard getting all the stuff you are requesting. I know I am probably just rambling on here about the stupid game but it really annoys me.

I really don’t want to be here anymore, and I don’t mean in my room. I think the book is getting to me. It’s giving me anxiety that I never dealt with before and I don’t like it. I was writing the intro today and I had to stress I wasn’t a medical professional because I don’t want people to read this and think yea I got it and go by my suggestions on what to do. I don’t have any suggestions. I might post them on this blog but I will post a disclaimer just in case someone does something and they get injured by it. I have to do that because everyone loves to sue somebody in the US. I think it’s because of lawyers. I hate lawyers but they have to earn their living. I just don’t understand why it has to be at someone else’s expense. A Corporation I can see, but a person, that is going too far.

So I am going to order a California burger because I need meat and pray that it is not dried out and disgusting. I should order the Taza Chocolate with cinnamon but that might be going overboard.

And it was a good burger. HUGE but good. I didn’t finish it all. It was like having two whoppers! But I loved eating the avocado. I wish I would remember to buy them when I am in the store but I never do.

I still am feeling low. I am thinking once more of killing myself. I don’t think I will act on it. It’s just that the thoughts are there. Whenever I get low, that is my go to place. I can’t stand living like this. My ankle is starting to hurt. I am so full from that burger that my stomach hurts. I only had ¾’s of it. I just don’t want to be here anymore. Why do I have to live when I don’t want to? Why does society demand that this is not right thinking? I bet if they felt this pain they would want to die too. I know everyone’s pain is different but come on, I have been suffering enough.

it sucks living with CES

by Midnight Demon, posted in blogging, cauda equina syndrome, chronic physical pain, depression

I still have been in a weird mood. I don’t know why. Seems so weird that last week I was in the depths of a suicidal depression and this week I am the complete opposite. I am not manic or anything because I am eating and sleeping at least 6 hours. I keep waiting for the shoe to drop. I am a little more depressed today than I was yesterday though so maybe I am going back to my normal depressed self.

I editing my book today and I just felt sad about it. People are going to be reading about my condition called Cauda Equina Syndrome (CES) and know about my difficulties going to the bathroom and my issues with taking a shower. I know I shouldn’t really put it out there but my book is compiled of my blogs. SO the words are out there. I have not gotten any criticisms or negativity on my blog. But I don’t know if my book will make the headlines or anything. It will be the first book that I know of dealing with CES and what it is like living with this condition. The thing is people need to be aware of this condition because it can happen to anyone. It doesn’t discriminate. I am no medical professional but trust me you wouldn’t want this condition to happen to you. It sucks living with CES. You have medical professionals that don’t care after you have had surgery about the nerve pain or the nerve damage that leads to possibly another chronic pain condition known as CRPS (Complex Regional Pain Syndrome). You get this condition and you are pretty much in pain for the rest of your life. I have the milder form of the condition so I am not in a 10+ pain every day but there are days when I do nothing and it flares up. Lately I have been ok with pain so maybe that is why my mood has shifted. But while I was walking home tonight, I got within the corner of my block and my foot acted up. It was killing me by the time I got home. It feels ok now that I have it up and I am laying down in bed. Thank god for laptops.

Not only do medical professionals deny that you have damage, but they also forget when you remind them the next appointment. I go through this every month I see my primary care doctor. It is like I am seeing him for the first time for my ankle pain, every single month! I get so frustrated. And now he thinks he found the cure by having a cortisone injection. I don’t want an injection. I don’t believe in them and I believe they can cause more harm than good, especially to joints. Plus, it isn’t an exact science. There is only a 50/50 chance it will work. Why should I go through the pain of having needles stuck in me for a 50/50 chance? No thank you! I don’t like those odds. Just like I didn’t like them for my back problem. Sometimes it works for people, but with my luck, I will be the 50% that it won’t work. And I am NOT going to be the one to say yea I will have it done JUST to have it done. Again, No Thank you! My body, my rules. I am not going to have anyone dictate what should be done with it. Pain medication is working for me so why not stick with that? I know that eventually the pain meds will stop working for me or I will have a dependence on them but as long as my doctor prescribes them, my life is manageable. And isn’t that the important thing?

another shitty night of sleep

by Midnight Demon, posted in blogging, cauda equina syndrome, CES, chronic physical pain

I had another shitty night of sleep. I was in pain for most of the night and then when I woke up this morning, I was in the same amount of pain. So I took some pain meds, made breakfast, and then went back to sleep. I didn’t wake back up til after 3. I still am tired but not in so much pain. It has quieted down some, though I don’t know for how long.

I just had dinner a little while ago. I swear I could go back to sleep but I know that if I do, the same pattern of sleeping is going to resume and I am not going to get anything done. I still have to put my edits into the word document file. That is going to take some doing. And when I do it, I am shutting off my fricken phone because I don’t want any distractions. Even as I am typing this, some text messages are coming in or alerts for Words with Friends. I don’t need them. Ok I am a little grumpy because I have not had a good sleep and I am tired. If it wasn’t so late, I would probably go to Walgreens, get my half and half, and then make me a cup of coffee. But it’s after 6 now and if I have coffee now, I am going to be up half the night. I should make myself a cup of tea. That will wake me up but not keep me up. I really need to go to the grocery store this week (after Thanksgiving) to get more tea and pick up my coffee for the Keurig. Now that I have edited more than 100 pages, I can get my coffee reward. It might sound strange but it’s the little goals that keep you going when you are working on a project.

Last night I emailed my writing partner and told her I was thinking of going to Amazon for publishing and what did she think of it. I haven’t heard back because we really haven’t talked about how to get my book published other than me writing it. And I will be damned if this thing just sits around while time goes by. More and more people are publishing their stories about suicide. I would like to be among them. I also told her about my worries about the first few months of this being successful and then nothing. I just hope this doesn’t end up making me lose my disability. I will be so upset because it took me so long to reach that point to admit being disabled and go for it. And then I will be flipping out because I don’t know what I will do for income. But on the other hand, if my book is really successful, then I don’t have to worry about it. But I know it’s not so there is that fear as well.

Might write another blog later. I can’t keep up with this one so I will stop here.

rambling 58

by Midnight Demon, posted in blogging, cauda equina syndrome, chronic physical pain, depression

Literally spent the day in bed. I was so tired that I couldn’t be bothered getting out. I woke up with pain again, took my pain meds, and it was lights out. My mother woke me up to say dinner was ready and I just had it now. I hate it when I have days like today where all I want to do is stay and bed and do it. Tomorrow I have to get some editing done as I didn’t get any done today. I didn’t even so much as read. I played on the computer for a little while this morning after having breakfast and then it was lights out. I hope this doesn’t disrupt my sleeping pattern. I was really getting some sleep with me adding the remeron to my regimen. If I am able to get some good sleep tonight, I will ask my pdoc to write a script for it so I can get some decent sleep. I find that I don’t wake up in the middle of the night like I did without taking it.

My biggest thing that I had to do today was take a shower, which I still have not done yet. Last time I showered was I think Sunday. So yes, I am pretty gross right now and smell so rosey, not. I was trying to see if my family members would notice if I didn’t shower or anything and no one did. I wasn’t expecting them to.

I started to re-read Touched with Fire by Kay Redfield Jamison. I finally found the entry I have been looking for regarding Edgar Allan Poe’s letter. I have it practically memorized. It is a good account of what it is like living with a torturous depression such as lucky me, I have. And what makes me all the more special is there isn’t a medication I can take to control all the symptoms. It sucks. I don’t know why I bother taking my mood stabilizer sometimes because I still feel like shit. But I know that if I am feeling like shit now and I stop taking it, I am going to be beyond shit.

One of the other books that I dug out from my stash was Paul Quinnet’s book Suicide the Forever Decision. I have not read that book in years. I have to say it is one of the well known books and it is free online in PDF form if you want it here. When I met him last year at the AAS conference, BOY is he fricken tall. I am like 5 feet tall. He is like at least 6 feet 2 inches. The picture that someone took for me is unreal. It looks like I am next to a giant. If I was good with media, I would place the pic in this blog but I don’t know how to do that. Anyways, when I was talking with him, he was trying to get the book on kindle for free. It’s not yet, but it is a low $2.99 (USD). But go on the website and get yourself a free copy of it. I printed it out and have it in a binder because I forgot where my copy was. It’s not the original that I had because the spine is fairly new. My copy would have been a dead spine. I have read that book so often. It really helped me when I was a teenager and it still helps me today.

You can say that I didn’t have time for suicidal thoughts today. I was too sleepy and drugged to be suicidal. I wish my pain was gone so that I didn’t have to think about what lies ahead for me with it.

The next few months are going to be hard for me financially. I am going to try and save some money so that I can pay the editor to edit my book. Thing is, I have to wait until fricken March for her to take my book. I don’t know if I can wait that long to have my book just sitting on a hard drive. I do hope by then I can have some people read it and tell me it is a good book or if changes need to be made. I might have to ask the people in my support group to help. I just need one or two or three people to look the book over and see if there are things that I missed or don’t make sense. But these people would be someone I have to trust and be able to work on my book without backing out of the commitment. And I know some of the member deal with pain all the time and would really be a challenge for them to read a book in a selected time frame. But I still have lots to do before I get there because I still have no table of contents or introductory passage or a solid ending. The ending that I had, I had to take out because it wasn’t kosher (long story).

I hope I am not getting sick. My throat has been hurting me for most of the day. I hope it isn’t that same virus that I got a few months ago. That was horrible. I couldn’t swallow for almost two weeks. And I really don’t want to be sick for Thanksgiving.